tag:blogger.com,1999:blog-8824828113983189391.post7836099907865460879..comments2015-03-02T12:55:09.280-05:00Comments on Despite Lupus: Prescriptions 101: PlaquenilSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-8824828113983189391.post-38858302397777924342014-12-13T20:57:42.626-05:002014-12-13T20:57:42.626-05:00Sara I don&#39;t know if unr still checking ur blo...Sara I don&#39;t know if unr still checking ur blog but I see that they put u on metho for a while. How didn&#39;t react to it. I&#39;ve been on plaquenil for 23 years between 200 and 400 mg . In the beginning of this year I had to do a round of prednisone cause I keep flaring and my rashes keep coming back. I have discoid lupus. Now my rashes are acting up again and the doc up the dose on the plaquenil again to 400 and he put me on metho. But when I read about the side effects I freak out. Let me throw in there that I&#39;m emetophobic ( phobia of throwing up) so when I read that&#39;s one of the side effect I didn&#39;t even buy the pills. This med is basically quimo. And the side effect r so much worse than the Plaquenil. How was ur experience with metho?Mercedes Medinahttp://www.blogger.com/profile/17390828676626508691noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-35069674919995853992013-11-01T05:09:20.499-04:002013-11-01T05:09:20.499-04:00The unkown infection causing ra or lupus is quite ...The unkown infection causing ra or lupus is quite possibly lyme disease or babesia(a form of malaria)...many lyme patients are having sucess with this drug...get tested for lyme and co infections..a lot of us w lyme have joint ra issues and or lupus..find a lyme litetate doc..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-36350025821666607022013-06-25T21:45:27.727-04:002013-06-25T21:45:27.727-04:00Jodi - How&#39;s the plaquenil going? It usually t...Jodi - How&#39;s the plaquenil going? It usually takes some time to a) let your body settle into the drug, and b) let the plaquenil start working! I hope it&#39;s going well - and be sure to pose any and all questions you have (re: dosage, side-effects, etc.) to your doctor. He/she is the best one to answer them - because each lupus patient is different. And don&#39;t be shy! No question is a silly one! take care - SGSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-47229293985404565812013-05-15T01:26:41.314-04:002013-05-15T01:26:41.314-04:00I just now took my first dose of Plaquenil. the g...I just now took my first dose of Plaquenil. the generic brand, im nervous about if I will get sick, dizzy etc.. at all. praying no sad effects. I was started out on 400 mg one time a day at bedtime. sounds different then some of what I have read. Is this normal? any info on anything with this or Lupus would help me. been doing alot of net reading but oh my goodness so much out there n so many different things so not sure what to think or believe so I thought maybe i need to hear from others who have it as well. thank you for your time. take care.Jodie Thompsonhttp://www.blogger.com/profile/16975768848718008748noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-8653203206801829712013-05-10T23:23:20.712-04:002013-05-10T23:23:20.712-04:00I just found out Monday I have Lupus., Had a bunch...I just found out Monday I have Lupus., Had a bunch of blood work done and she said that came back good . so only other thing I need to do is see one more doc to see about my muscles n nerves being I know I have some damage from all the surgeries Ive had in last year. I was hoping the reason I am so tired, no energy, pain was part of lupus now that I know but reading side effects sounds like it could cause same issues I am having. kinda scares me now. I have that med waiting for me at the store (planquenil) n was told to take it for now one each night before bed. and will need to take rest of my life. until i get other test done as of now they thing i just have the skin lupus. i am allergic to alot of meds n do have stomach issues. i am scared now this stuff will hurt me more then help me. what do you think? thank u for your post. take care.Jodie Thompsonhttp://www.blogger.com/profile/16975768848718008748noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-15953748533884466842013-03-18T18:00:46.630-04:002013-03-18T18:00:46.630-04:00I&#39;ve heard that same comment about avoiding ge...I&#39;ve heard that same comment about avoiding generics from others. thanks for sharing your thoughts and experience. And so glad the gluten free has had such a positive impact. That&#39;s great news! It seems to be about 50/50 in terms of those that have success...so i&#39;m so glad it worked!! Those that do, swear by it. good to hear from you and take care.Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-84987656439980943622013-03-18T17:55:56.299-04:002013-03-18T17:55:56.299-04:00Sorry for the late, oh-so-late reply. i wasn&#39;t...Sorry for the late, oh-so-late reply. i wasn&#39;t getting comment alerts for awhile! i hope your hunch was right and your hair was indeed growing in. As far as your question, i think it&#39;s hard to know what causes the hair loss to begin with, so ideally, working with a doctor to determine which meds or other factors are contributing to the loss will lead to the return of hair growth. Hope you&#39;re well!Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-76320598637547882192013-03-18T17:49:57.878-04:002013-03-18T17:49:57.878-04:00Just seeing your comment now...but i figured i&#39...Just seeing your comment now...but i figured i&#39;d respond, despite my belated reply! i haven&#39;t heard of plaquenil specifically stimulating hair growth, but ideally, if it&#39;s keeping disease activity at bay, then hair loss will be diminished, and hair growth will normalize. so many factors to consider, of course, as drugs work so differently per individual. i hope you&#39;re doing well!Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-87612133358351416172013-03-18T15:22:43.538-04:002013-03-18T15:22:43.538-04:00Found an article about a doctor in Australia treat...Found an article about a doctor in Australia treating lupus patients for 20 years with no meds, but on a gluten-free / lactose free diet. I started the glutten-free diet about 6 months ago, lost 20 pounds and feel a lot better. Have not had any flare ups since. Will start the lactose-free (harder for me) in a few weeks. Still taking plaquenil and CellCept. Both heaven sent. Hope this helps. If possible, take the Plaquenil and Cellcept brand names not the generic.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-87556391196299360762010-12-05T10:39:14.223-05:002010-12-05T10:39:14.223-05:00I was diagnosed with Lupus SLE about 6 months ago....I was diagnosed with Lupus SLE about 6 months ago...been on Plaquenil since then. Initially, before the diagnosis, I lost a lot of hair. Do most people regain their hair after being on this drug for a while? I have read conflicting reports. It&#39;s not coming out as much...and I think I feel new little hairs growing in ( or that may be wishful thinking)...I just want my hair back!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-50199873584490959502010-10-13T20:22:37.282-04:002010-10-13T20:22:37.282-04:00Has anyone who has had hair loss experienced plaqu...Has anyone who has had hair loss experienced plaquenil helping their hair grow back? I hope so ...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-31056062549069840612009-04-28T18:17:00.000-04:002009-04-28T18:17:00.000-04:00I'm pretty sure Dr. Stahl is taking new patients, ...I'm pretty sure Dr. Stahl is taking new patients, but I can't be sure of the others. <br /><br />Here's another No.Va. rheumatologist who gets rave reviews: <br />Dr. Kempf in Arlington - 703-525-3069Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-60705783324317801252009-04-28T18:07:00.000-04:002009-04-28T18:07:00.000-04:00I agree, MaNouvelleVie! Aside from the eye trouble...I agree, MaNouvelleVie! Aside from the eye trouble I had, I think plaquenil is an ideal solution to control lupus activity. Here's hoping it works for you. And you know a little bit of prednisone always helps. :) Thanks so much for sharing.Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-6068345046141451502009-04-26T22:40:00.000-04:002009-04-26T22:40:00.000-04:00hey there! just found your blog, its nice to "meet...hey there! just found your blog, its nice to "meet" another lupus blogger - I actually live in VA, and I am looking for a new rhuematologist. Do you know is the doctors you recommend are accepting new patients?sweetandfithttp://sweetandfit.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-76379989779081251992009-04-25T15:54:00.000-04:002009-04-25T15:54:00.000-04:00This is my first time hearing of someone else's ex...This is my first time hearing of someone else's experience with Plaquenil! I have been on it since my diagnosis in '95. It has been pretty helpful for me. I've had brief flares so I needed something more, so my previous doctors would prescribe Prednisone to help. The doctor I'm seeing now has went about it more aggressively though, adding both Methotrexate and Cellcept to my regular Plaquenil treatment. I didn't think much of it at first, but when one of my friends, who is having more serious Lupus complications, told me she being treated with those, I started to have doubts. Also, I had been put on Cellcept before by a doctor that wasn't my regular Rheumy, after going to the E.R. with complications while on vacation. But when I returned home my Rheumy at the time insisted I get off the Cellcept. She said that the complications (the same ones I'm having now) I was having didn't call for such an aggressive treatment. I was put on a Prednisone taper that took care of the problem right away. So recently I asked my current Rheumy if I could try to see how I do without the Methotrexate and Cellcept which have been causing side effects. So far I'm doing just fine. Anyway, I'd much rather go up on the Plaquenil or try another Prednisone taper which I haven't had any side effects from.MaNouvelleVienoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-64865451759252700722009-04-24T21:10:00.000-04:002009-04-24T21:10:00.000-04:00Hope this flare doesn't stick around. Best of luck...Hope this flare doesn't stick around. Best of luck and keep me posted. I'll be thinking of you and hoping that those steroids do the trick.Sara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-80744868012700282942009-04-24T08:45:00.000-04:002009-04-24T08:45:00.000-04:00Thanks for this post Sara! I've been on Plaquenil ...Thanks for this post Sara! I've been on Plaquenil for two years and am currently in my first flare from my initial diagnosis. My doctor has put me on a round of steroids so we will see what happens. But I needed the reminder about Plaquenil and to remember to keep this disease at the front of my brain!B-O-Bhttp://www.blogger.com/profile/12093300167509380708noreply@blogger.com